What is PANDAS Syndrome?

Strep throat is a common childhood illness. Some kids get it again and again, and a simple round of antibiotics usually clears it up. But for a small number of children, the infection triggers strange behavior changes known as PANDAS syndrome: Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections.

With PANDAS, your child may seem to turn into a different person overnight, becoming moody, anxious, aggressive, obsessive compulsive behaviors, and dealing with body movements they can’t control. It can be scary, but once your child is diagnosed with PANDAS and starts treatment, it’s likely they’ll make a full recovery.

What causes it?

Doctors aren’t sure why some children get PANDAS, but it appears to be an autoimmune disorder. That’s when an infection causes your immune system to attack your body’s healthy cells, in this case, cells in the brain. The strep bacteria disguise themselves to look like normal cells. When the immune system eventually finds and fights them, it sometimes also fights the cells that the strep is imitating.

What are the symptoms?

Children with PANDAS suddenly show signs of obsessive-compulsive disorder (OCD,) tics, or both. The changes to their personality and behavior are quick and dramatic; they start abruptly and closely after a strep throat infection.

OCD causes thoughts they can’t put out of their mind, or an urge to repeat certain actions over and over.

Tics are sudden movements or sounds your child repeats over and over and can’t control. They may blink a lot or jerk their head. They may grunt, clear their throat constantly, or repeat words.

If your child already has OCD or tics, PANDAS will suddenly make their condition much worse.

Other symptoms include:

• Uncontrolled, jerky movements
• Symptoms of ADHD, such as hyperactivity, fidgeting, and trouble paying attention
• Anxiety attacks or fear of being away from parents or other caregivers
• Depression
• Behavior they’d grown out of, like temper tantrums or baby talk
• Joint pain
• Moodiness, irritability, and crying or laughing at inappropriate times
• Sensory problems, including being very sensitive to light and possibly seeing or hearing things that aren’t there
• Sleep problems
• Bed-wetting, peeing more often during the daytime, or both

How is it diagnosed?

A test for the strep bacteria or a history of the bacteria is necessary to confirm your child has PANDAS, which can mimic other disorders. If it doesn’t show up after a throat swab or antibody test, the doctor should check other places strep tends to hide, like the sinuses or your child’s bottom and genitals. A blood test can show whether your child had a recent strep infection even if they recovered.

If your child doesn’t or didn't have strep, they don’t have PANDAS. But their symptoms could still be part of an immune system response gone wrong. PANDAS is part of a larger group of autoimmune diseases that affect the brain called pediatric acute-onset neuropsychiatric syndrome (PANS). The symptoms are similar, but they may be triggered by something other than strep. Your child’s doctor may order blood tests or brain scans to see if a different infection or something else entirely is causing the symptoms.

Not all doctors have experience diagnosing PANDAS. Your child may need to see a rheumatologist or an immunologist, or someone who specializes in strep infections. A referral to a psychiatrist or psychologist will probably be part of the treatment plan.

What treatments are there?

The sooner you can diagnose and treat PANDAS, the better the chances are that the symptoms will go away. Treatment usually involves medication and therapy.

Antibiotics. Your child’s doctor will treat the underlying strep infection with antibiotics. It usually takes a week or two, although some kids improve within days. You may have to try more than one antibiotic to find what works.

Anti-inflammatories. These drugs can calm the immune system. Your child may get a steroid pill for several days. Nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen may also help.

Cognitive behavioral therapy. While medications fight the infection, therapy can help control the OCD. A therapist will give your child strategies to deal with OCD thoughts and fears. It’s important for you to learn what goes on in therapy so you can help your child apply it at home.

Antidepressants. Medications called selective serotonin reuptake inhibitors (SSRIs) can help manage OCD. But they can be dangerous for children, and kids with PANDAS seem to be especially likely to have side effects. If your doctor recommends them, make sure you understand the right dose to give and any problems to watch for.

IVIG/Plasmapheresis. If other treatments don’t work, or your child’s symptoms are so severe they can’t function, their doctor might consider a more extreme procedure to reset their immune system. One option is IVIG, an infusion of antibodies from other people, delivered through a vein. In another option, plasmapheresis, doctors remove blood from your child’s body and filter it through a machine that removes the antibodies that are attacking their brain.

Will my child get better?

Although it may take time, most children who have PANDAS recover completely with treatment.

Symptoms tend to slowly get better over several months once the strep infection clears, but there may be ups and downs.

PANDAS is likely to come back if your child gets strep again. Sometimes all it takes is exposure to the germ. To help your child stay healthy, teach good hygiene habits: wash hands, change toothbrushes often, and stay away from sick people. Your whole family may need to get tested for strep to make sure no one is carrying the bacteria.

Your pediatrician may prescribe antibiotics long-term to try to prevent new strep infections. Some children have their tonsils removed. But scientists haven’t studied either of these strategies enough to know whether they work.

It’s rare for kids older than 12 to have reactions to strep infections. But that doesn’t mean your teenager is out of the woods. Very little research has looked into whether PANDAS can show up in older kids or adults. So it’s important to know the symptoms and get medical help quickly when they seem to appear.

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